Ménière’s Disease – Silences Sound, After Annoying Ringing

A disorder of the inner ear, with no known cause and no cure. There are treatments for the symptoms but no cure.

Signs and symptoms of Meniere’s include severe vertigo, tinnitus (ringing in the ears), ears that feel full or congestion (liken to ear infection pain) and hearing loss. Typically this only affects one ear, sometimes (about 30% of the time), it can affect both. You can also get muffled hearing, which sounds like being under water. According to some sources, it can take between 5 and 15 years to run its course. It is not noted however, if this is from diagnosis or onset.

Meniere’s is more likely to develop if someone else in the family has it. Some sources say it starts between ages 40-60 and others say 20-50. That’s quite the large spread for age of onset. One of the most common signs, other than vertigo is the sensitivity to sounds, whether loud or certain pitches. For me, it’s whistling, it grates my nerves and causes migraines. It didn’t used to, but now, living in a house of males who like to whistle I am constantly being the terrible nag begging them to stop.

The symptoms are thought to be related to a buildup of fluid in the parts of the inner ear known as the “labyrinth”, this is where balance and hearing organs are located. An abnormal fluid buildup in this location interferes with the communication to the brain that signals sounds and balance.

Getting Meniere’s disease, much like Multiple Sclerosis in my opinion, appears to be a combination of things happening causing a perfect storm. Researchers think that perhaps a constriction of blood vessels could trigger the disease, much like the constriction that cause migraines. There are also theories about viral infections, allergies, migraines, head trauma and auto-immune responses. If you have Meniere’s I can tell you for certain the tests needed to confirm the diagnosis are terrible. The one that was the worst for me was when they blew different temperatures of air into each ear and asked me questions. I got so sick doing that test I almost threw up in the office.

The hearing loss that happens with Meniere’s usually happens at lower level sounds, whereas age related hearing loss usually impacts higher level sounds. Bouts of vertigo could cause more hearing loss but in general there is a steady, slow loss of hearing in the affected ear. Hearing loss is permanent and sometimes can lead to complete loss of hearing the afflicted ear.

Due to the vertigo that comes with this disease, people are more at risk for falls and something called “drop attacks” which is a sudden fall to the ground. There’s another thing I was unaware of prior to testing. At what point do you know what is caused by Meniere’s and what is caused by Multiple Sclerosis, which also puts patients at an increased risk of falling.

It is thought that up to one-third of patients with Meniere’s also suffer with migraines. Some of the more odd things that come from the Vertigo complication and not directly from Meniere’s is nausea, vomiting and sweating. Apparently frequent attacks of vertigo can wreak havoc on the digestive system and the hormone response from the same can cause excess sweating.

There are several types of treatments for the different symptoms. Diuretics or low salt diets are the go to, however, I have low blood pressure so that was not an option for me. I tried several different pills for the vertigo, none of them worked. They finally prescribed me a patch you put behind your ear for up to 3 days and that did work. I was able to take a plane and a ferry boat while wearing it without getting sick.

There’s an injection of dexamethasone or gentamicin which I have not been brave enough to even ask about and surgery. These injections go into your eardrum (shiver) and can reduce the vertigo but increase the loss of hearing and worsen your overall balance. Surgery is the last option which only treats the worse vertigo.

It is kind of crazy how one tiny part of your body can mess the whole thing up. I have been trying to come to terms with the fact that I have this disease in both ears. I wear a hearing aid in the left as it is the worse of the two for now. It has a setting on it that is supposed to reprogram my brain to stop trying to hear the waves that cause the tinnitus. Eventually, I will need a hearing aid for the other side too, I say there must be a reason I learned sign language as my second language because I will most likely have to rely on it at some point in my life now. Though it may help with the “Cog Fog” and word finding problems I have with my MS.

If you need a hearing aid though, the one I got it really small and most people don’t even notice unless I say something and/or adjust the volume in front of them. Though now, I kind of wish I had gotten one with a cool design, I see kids at my youngest son’s school rocking camo or bright red ones and I am a little jealous.




Coping with Disability and Being a Parent

I used to be a very proud person, well in most ways pride is still something I struggle with. Prior to being diagnosed, if you asked me what my best qualities were, I would probably say that I was self-sufficient, strong and/or independent. Today, the independence is no longer much of an option. I need a lot of help, I mean like I could use a team of people to help me with the typical stuff moms do. If I ever win the lottery (which won’t happen because I don’t gamble) the first thing I would do is hire at least 2 people to come to my house at least once a week to do cleaning, then a laundry service, one that folds and hangs clothes, and a chef… who I am kidding I would do that and hire someone to help my kids with their homework because this new math hurts my brain more than Trig did when I was in high school and my brain worked.

These were never things that crossed my mind when I was in my early twenties, I was going to be a stay at home mom who helped with all the homework and school projects, had a clean house and a healthy snack ready for when they got home from school. Multiple Sclerosis takes a lot of things from you. It’s different for each person too, it also requires getting your stubborn brain around the concept that you are no longer that strong, independent person who can manage everything on their own. I do not like being that person. It’s a process, and I speak with a therapist regularly about my life, the changing, the constant struggle of being a good parent and partner while internally struggling with the idea of moving forward with a body that is in a continuous state of decline.

There’s a harder part for me that has been a huge challenge in being a parent, with my oldest, I was able to stay home for the first two years. I took him to play dates and activities, the zoo, the museum, anything I could to encourage his growing brain to develop skills and curiosity. They always say the second one is harder, I get it… there’s two of them now, you must adjust to not having one on one time with the children. With our second child I worked, I had missed working so I was prepared to stay at my job. There’s always that guilt that working moms have, being a mom is a job too, but sometimes for the happiness of everyone you have to go to work and have grown up conversations.

As time moved forward things seem to just keep getting weirder for my health. Before I got pregnant with our second son, I was told I would not have any more kids unless I had IVF, I don’t like needles so we prepared for an only child. I started having severe chest pain; I had a heart issue in high school, so I was worried it had reared up again. This led to stress tests, EKGs, echoes and even a 30-day heart monitor. The Cardiologist told me it wasn’t my heart and shrugged at me because this was the only thing, she could tell me. It took 3 years from the extensive heart testing to be diagnosed with M.S. and then I was told it was mostly likely an MS Hug because of the location of a lesion on my spine.

Since my youngest I have not felt at my “best”, getting used to what being a parent looks like now is a very long, challenging process for me, I am sure it is for most, especially ones with young kids. You always want to be your best for them, they don’t understand “chronic pain” thankfully most kids don’t understand what migraines are. Each day I wake up with the intent to be a more patient and engaging mother, and when I fall short, I try to be kind to myself, my kids and go to bed pledging to try again the next day. For other parents out there with autoimmune diseases, chronic pain and fatigue or over whelming stress, I know it’s hard. Plan to try your best and don’t beat yourself up when the day doesn’t go as planned and everything turns into a cluster, it happens but at least you tried.

Little Things… be grateful

Today, the boys do not have school. They get the day off because it’s parent teacher conference time. This morning we went to my youngest conference and then we stopped to pick up groceries on the way home. Most people grocery shop with a list and walking into the store and down all the required aisles. I do not. I have a service dog that some people still don’t realize that touching without asking is not okay. So instead of using my allotted spoons (energy for those of you without a chronic illness) for buying groceries I order them online and have the nice people at my local store load them up for me.

This online shopping is becoming increasing popular for the general public. Honestly, it helps me in many ways, I don’t have to worry about forgetting something, I start my list online several days before hand and then ask each family member if they need anything in particular. This gives everyone the chance to give me information and I do not have to worry about multiple trips. I don’t use my little energy walking into the store and gathering all the items while also answering people’s questions about my service dog and also advising them that “no, please do not touch him, he’s working”, then loading the car, unloading the car and putting everything away. I know it doesn’t sound exhausting to the “normal” person, but let me tell you, my brain is fried after and my body is more fatigued and requires rest for at least 2 hours before really trying to do anything else.

Today, my loving boys helped me more than then probably realized. We got the online order packed into my car and went home. Once we go there, the boys unloaded almost the entire car for me. They came in like a well oiled machine, one, then the other, over and over, handing me bags of groceries that I just put away. I thanked them for helping me SO MUCH, I think they thought I was just being polite. But honestly, now, because they helped me bring all of the groceries in I may be able to do a load of laundry today or something else.

A very long time ago I used to work in retail. I know it is a hard job, I appreciate the people who do it because it’s not something I could do again. When I thanked the man helping me with my order he kept apologizing for not being able to complete part of my order. I don’t mind, I told him, they saved me time and stress I am just delighted I didn’t have to do it. He told me I would be surprised by how upset some people get because they don’t get a specific brand of carrots. You know what though, the people who are going to be pissy about having the luxury of someone else going around and doing their shopping so they don’t have to should rethink their life goals. If a specific brand is that important to you and it’s going to ruin your day, take you working legs into the store and shop yourself. It’s not their fault your specific, no substitution product was not available.

It’s November, be grateful for what you can, some days are going to be harder than others, but some lives are harder than others.